Man living full life 8 years with advanced pancreatic cancer
DOTHAN, Ala. (AP) — Eight years, 142 chemotherapy treatments to date, multiple surgeries and procedures, and an ongoing battle with Stage 4 pancreatic cancer have not stopped one Dothan man from viewing the future as one filled with opportunity.
Defeating grim odds, Mark Williams, director of technology services for the Dothan City School system, has long outlived the 18-month prognosis his surgeon delivered toward the beginning of his diagnosis.
“There’s a difference in planning to live and not planning to die,” he said. “I want to be here for a while. You don’t know what tomorrow may bring.”
Surprising himself and his team, when his oncologist called Williams’ Birmingham surgeon to ask a question not too long ago, Williams heard him through the phone exclaim, “Good gosh, he’s still alive?”
The initial finding of a tumor on his pancreas came as a shock to Williams, who had seen the detrimental effects of cancer on his parents. Each succumbed to different forms of leukemia.
“The ‘C’ word was not really foreign to me or as scary as it might have been for someone else,” he said. “But the pancreatic part of it — it was very, very . surreal.”
At the time, he was diagnosed as late Stage 3, but the cancer was advanced enough for Williams’ doctor to qualify him as a candidate for Whipple surgery.
A Whipple procedure — also known as a pancreaticoduodenectomy — is a complex operation to remove the head of the pancreas, the first part of the small intestine (duodenum), the gallbladder, and the bile duct. After the procedure, the surgeon reconnects the remaining organs to allow the patient to digest food normally after surgery.
The surgery is serious, akin to open-heart surgery. But, Williams got through it without complication and with relief from jaundice and itchiness all over his body.
Returning to Dothan with different plumbing, Williams eventually returned to work five days a week, only taking a half day off most Wednesdays to take chemo treatments at Dothan Hematology and Oncology.
He has had the opportunity to seek treatment with some of the best pancreatic doctors in the nation, but he decided to stay in Dothan, where he felt he would get the same level of care without clinical trials and remain with his support group and his family.
Williams said that many people ask him how he copes with his illness daily.
“The difference between me and you is I’m probably getting the best medical care in the city,” he said.
He is monitored closely by a number of physicians and specialists who check his blood every week, perform CT scans every three months, and give him regular checkups to detect any change to Williams’ health.
“Some people are walking time bombs and they don’t even know it,” he said. “They’ve got heart problems or they’ve got other issues and they have no idea. So really, I just look it at that way. I get a lot of care that other people don’t get.”
Williams finds he has strength with knowledge and doesn’t feel weighed down with “scan-xiety” that many cancer patients have.
“I’ve tried to view it differently,” he said. “You can’t fight what you don’t know. So, when I get my scans, I don’t worry about them. I just want to know. If there’s something there, let’s plan out an attack and let’s do it.”
Fighting cancer has taken a physical toll on Williams, who is now 63. Since his Whipple, he has had to take supplemental enzymes whenever he eats to help his body retain the nutrients in his food. Even so, he has lost 100 pounds. He has had MRSA, sepsis, kidney stones, and several close calls caused by a weakened immune system response.
“You know, you don’t think about it,” Williams said. “You do what you have to do and you keep going.”
Typically for advanced pancreatic cancer, patients are given a median survival duration of eight months. Having survived over seven years past that sentence, Williams and his oncologists don’t have an answer for how he’s lived and thrived this long.
“I wish I could tell you something that was some magical thing that I did that everybody could and it could change everything for them,” he said. “But, really, I attribute it to the grace of God.”
With no plans to retire soon, Williams maintains a positive outlook on life although he realizes the fatal turn it could one day take.
“I do know that I could go in... and they could say ‘Your scan looks bad. It’s all over you. Things have changed and there’s not much we can do it about it,’” he said. “But I don’t plan on it.”
He has pulled various stunts to bring light to his illness for his own sake and the sake of those around him.
Williams can often be seen sporting a chemo pump on his belt embroidered with the descriptive pun, “chemo-sabe.”
“That’s just one of the ways I deal with it,” he said. “People — they kind of smile or light up.”
He has shown up to his office wearing an ill-fitting toupee, dressed up for Halloween as Mr. Clean, and hid the tube coming out of his chest with Band-Aids and a USB cord escaping underneath to confuse an unsuspecting nurse during one of his treatments.
Part of the reason pancreatic cancer is arguably the worst case is because it generally goes undetected until it’s beginning to cause problems. At that point, it generally has already metastasized and spread to other vital organs. Thankfully, for Williams, he has sustained through some advancements in treatment.
However, for the tricky illness, Williams said, “there are not that many arrows in the quiver.” He may soon be picking among the last ones of his own and begin to seek out clinical trials or treatment elsewhere.
Williams attributes his positivity to his faithful caregiver of a wife, a job that he loves, and maintaining a Plan B with his oncologist in case the treatment he’s on stops working.
He is especially pleased with the passing of the “Right to Try” Act that President Donald Trump signed last year that gives people suffering fatal illnesses the right to try a promising treatment before it gains FDA approval.
“I think it’s fantastic for people with cancer,” Williams said. “There are changes in medicine all the time. so that keeps me on a more positive attitude, the ability to know that. ”
He hopes to follow the legacy of his mother, who had been diagnosed with breast cancer when he was a teenager, in offering hope to others. He said he’s always available to use his story to offer comfort, support, advice, or a listening ear to others struggling with their diagnosis.
He said the most important thing for those with cancer and their families to know is that a diagnosis is not a death sentence.
“Everybody responds differently,” he said. “Don’t think that you are going to respond the same way that someone else responded negatively to. Chemo has come a long way.”
He also advises that people take responsibility in their own treatment with research and communicating with their doctors, or, if necessary, getting a second or third opinion.
Meanwhile, Williams continues to plan for the future, not worrying about an appointment with death that may or may not come with the fatal disease.
“There’s still more life to live out there,” he said. “If I wake up on this side of the grass, I’m good.”
He is currently waiting to hear back on an application with Guinness World Records to see if has broken the record for the most chemo treatments.
Information from: The Dothan Eagle, http://www.dothaneagle.com